dying well— the final stage of survivorship · 2016. 8. 3. · 4 introduction dying well—the...

Dying Well— The Final Stage of Survivorship Practical Resources and Guidance for Cancer Survivors and Their Loved Ones

“I worked through my dying to

go on with my living. I believe

that once we have prepared to

die, we are really freed to live in

whatever time we have left.”

—Amy Harwell, cancer survivor

and author

A Cancer Survival Toolbox® audio

program designed to help you and

your family choose the best path

during the last stages of life.

• Stories from survivors and

caregivers

• Information about your

choices and resources

• Guidance to manage hope

and expectations

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Table of Contents

Introduction 4

Resources for Dying Well—The Final Stage of Survivorship 5

Alphabetical List of Support Organizations and Other Resources 6

Survivorship Tools 18

Books Related to End-of-Life Concerns 20

Contributors 21

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4

Introduction

Dying Well—The Final Stage of Survivorship is part of the Cancer Survival Toolbox®, which was created by the National Coalition for Cancer Survivorship (NCCS), along with cancer survivors and leading cancer organizations, to help you and your loved ones deal with a cancer diagnosis no matter where you are in your journey.

Although death is an inevitable part of life, few of us know just what to do or say or how to find the support we need when we are nearing the end of our lives and saying our final goodbyes. Dying Well—The Final Stage of Survivorship is an informative, supportive, and reassuring program designed to teach you more about your choices and resources and what to expect during this last stage of survival.

After listening to this Toolbox program, you and your loved ones will be better prepared to:

• Communicate with the members of your cancer care team, as well as family, friends, employers, and coworkers

• Manage hopes and expectations

• Deal with any anxiety or depression that may arise

• Make decisions about symptom management (including controlling pain) and continuing or stopping treatment

• Recognize what is happening during the dying process

• Make informed decisions about hospice/palliative care

• Manage grief

Resources for Dying Well— The Final Stage of Survivorship

Unlike 20 years ago, when cancer and grief were both kept hidden, there is now a great deal of information to help you and your loved ones learn about your choices and resources. The Cancer Survival Toolbox, Basic Skills programs—communicating, finding information, decision-making, problem-solving, negotiating, and standing up for your rights—can be used at every step of the journey and are available free of charge from NCCS. The resources listed here may be helpful for people with advanced illness.

5

Alphabetical List of Support Organizations and Other Resources

Important phone numbers and Internet addresses mentioned throughout the Toolbox audio program are listed below. For additional resources, please visit the Toolbox website at www.canceradvocacy.org/toolbox.

Use this key to help you identify which organizations/resources may be of most

use to you at this time.

Q Pain and Palliative Care

m Older Persons

: Caregivers

D Support Groups/One-on-One Support/Staying Connected

b End of Life

AARP (American Association of Retired Persons) m : D888-OUR-AARP (888-687-2277) www.aarp.org/families/caregiving

Provides various resources on issues of caregiving, such as long-term financing, home care, housing options, video and written resources, and an online weekly caregiver support group.

Aging With Dignity and Five Wishes®m b888-5-WISHES (888-594-7437) www.agingwithdignity.org

Affirms and safeguards the human dignity of individuals as they age and promotes better care for those near the end of life. Five Wishes uses everyday language to help you express how you want to be treated if you are seriously ill and unable to speak for yourself. It deals with all of a person’s needs: medical, personal, emo-tional, and spiritual. Available in several languages.

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American Academy of Hospice and Palliative Medicine Q m:Db

847-375-4712 www.palliativedoctors.org

Provides resources and guidance on palliative care, hospice, and legal and insurance issues relevant to people facing a serious illness.

American Association for Geriatric Psychiatry Q301-654-7850 www.aagpgpa.org

Provides referrals for geriatric psychiatrists. Also offers written materials for patients, family members, and caregivers.

American Cancer Society Q m :D

800-ACS-2345 (800-227-2345) www.cancer.org

Provides written information about cancer, cancer research, and treatment options. Call to locate a chapter near you and learn about what programs and resources are being offered, including the Patient Navigator Program.

American Childhood Cancer Organization D(formerly Candlelighters Childhood Cancer Foundation) 800-366-CCCF (800-366-2223) www.acco.org

Provides a network of support groups for children, parents, and caregivers.

American Chronic Pain Association Q800-533-3231 www.theacpa.org

Provides support for persons dealing with chronic pain. There are more than 800 chapters, and you may find the one closest to you by calling their central number.

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American Pain Foundation Q888-615-PAIN (888-615-7246) www.painfoundation.org

Dedicated to improving quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

American Pain Society Q 847-375-4715 www.ampainsoc.org

Provides a directory of more than 500 pain treatment centers in the United States.

Association of Oncology Social Work (AOSW) Q m : D

215-599-6093 www.aosw.org

An organization of oncology social workers and others who specialize in helping cancer survivors and their families with the emotional and practical impact of cancer.

Blogger.com :www.blogger.com

A way to share your thoughts, photos, and more with your friends and the world.

C3: Colorectal Cancer Coalition :877-4CRC-111 (877-427-2111) or 703-548-1225 www.fightcolorectalcancer.org

A national nonprofit advocacy organization whose mission is to win the fight against colorectal cancer through research, empowerment, and access. Provides information about colorectal cancer and clinical trials.

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Q Pain and Palliative Care m Older Persons : Caregivers D Support Resources b End of Life

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CancerCare Q m :D

800-813-HOPE (800-813-4673) www.cancercare.org

A national organization that provides a toll-free counseling line and educational programs. Counseling and some materials are available in Spanish. All services are free of charge.

Cancer.Net Q m :D 888-651-3038 www.cancer.net

A patient education website from the American Society of Clinical Oncology (ASCO) that provides information on more than 50 types of cancer and their treatments, clinical trials, side effects, and coping. Also includes live chats, message boards, and links to support groups.

Cancer Support Community Q :D

(includes The Wellness Community and Gilda’s Club) 888-793-WELL (888-793-9355) www.cancersupportcommunity.org www.thewellnesscommunity.org

A national nonprofit organization dedicated to providing free emotional support, education, and hope for people with cancer and their loved ones. Through participation in professionally led support groups, educational workshops, and mind/body programs utilizing the Patient Active Concept, people affected by cancer can learn vital skills to regain control, reduce feelings of isolation, and restore hope—regardless of the stage of disease. All programs are free of charge.

Caregiver Media Group Q:D

800-829-2734 www.caregiver.com

Provides an online newsletter, workshops, audiotapes, and information on caregivers and the work force, caregiver tips, and other topics.

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QPain and Palliative Care m Older Persons :Caregivers DSupport Resources bEnd of Life

CaringBridge :

651-789-2300 www.caringbridge.org/

Offers free, personalized websites that connect family and friends during a serious health event.

Caring Connections : b

800-658-8898 caringinfo.org

As the consumer site of the National Hospice and Palliative Care Organization, provides free resources and information to help people make decisions about end-of-life care and services before a crisis.

Caring Conversations® bCenter for Practical Bioethics 800-344-3829 www.practicalbioethics.org

Offers a step-by-step workbook to document wishes about end-of-life care, including personal, emotional, and spiritual needs as well as medical wishes. Also provides forms for durable power of attorney and advance treatment directive. Pro-vides separate resources for young adults, veterans, and Spanish speakers.

Center to Advance Palliative Care Qwww.getpalliativecare.org

Offers information about how palliative care can relieve suffering and help people achieve the best possible quality of life when facing pain, symptoms, and stresses of a serious illness.

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Children’s Hospice and Palliative Care Coalition Qb

831-763-3070 www.childrenshospice.org

Provides training and support to hospice teams to better meet the medical, emo-tional, and spiritual needs of the dying child and the family. Promotes policies and all-inclusive care programs that meet the complex medical, emotional, social, and practical needs of families who are experiencing great loss.

Circle of Sharing™ :circleofsharing.cancer.org/

An American Cancer Society resource that helps cancer patients and their caregivers get personalized information about the disease, and share that information with family and friends.

The Compassionate Friends Q b877-969-0010 www.compassionatefriends.org

Assists families toward the positive resolution of grief following the death of a child of any age and provides information to help others be supportive.

Eldercare Locator m

800-677-1116 www.eldercare.gov

A nationwide, directory-assistance service designed to help older persons and caregivers locate local support resources. Links you with state and local area agen-cies on aging, where you can get information about services such as transportation, meals, home care, housing alternatives, legal issues, and social activities.

Elisabeth Kübler-Ross Foundation Q bwww.ekrfoundation.org

Provides information and resources related to end-of-life care and for those who are grieving.

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Family Caregiver Alliance :800-445-8106 www.caregiver.org

A clearinghouse that covers current medical, social, public policy, and caregiving issues related to brain impairments in adults, including brain tumors. Information is also available in Spanish and Chinese.

Gerontological Society of America m202-842-1275 www.geron.org

An organization for professionals in the field of aging that focuses on promoting the scientific study of aging. Provides reports, bibliographic searches, publica-tions, and a list of online resources useful to older persons with cancer and their caregivers.

Good Grief D b

908-522-1999 www.good-grief.org

Provides direct services for children and adults coping with loss due to death.

Health Insurance Counseling and Advocacy Program (HICAP) m800-434-0222 www.aging.ca.gov/information_on/hicap.asp

A Medicare assistance program for the elderly and disabled. HICAP helps people learn about Medicare benefits including Medicare HMOs, long-term care, Medi-care supplemental or long-term care insurance, and other important changes in Medicare.

Hospice and Palliative Nurses Foundation Q m : D b

412-787-9301 www.hpnf.org

Provides funding for research and nursing education related to pain and symptom management at the end of life.

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Hospice Foundation of America Q m:Db

800-854-3402 www.hospicefoundation.org

Provides general information about hospices and will assist you in locating a hospice near you. Available on their website is The Dying Process: A Guide for Caregivers, a free booklet that discusses both the physical symptoms of dying and the psychological issues that accompany the dying process. Also offers free videos, webinars, and fact sheets on hospice, end-of-life care, and the Medicare Hospice Benefit. Provides a public service program called Ask HFA, where experts can answer questions on end-of-life issues.

Lance Armstrong Foundation/LIVESTRONG D866-467-7205 or 866-673-7205 www.livestrong.org

Seeks to promote the optimal physical, psychological, and social recovery and care of cancer survivors and their loved ones. The site features survivors discuss-ing their experiences as well as links to more information.

Leukemia & Lymphoma Society (LLS) D800-955-4572 www.leukemia.org/hm_lls

Provides support services, including local support groups and financial assistance to persons with leukemia, lymphoma, and multiple myeloma. Information about LLS resources is available in English, Spanish, Portuguese, and French.

MyLifeLine D

www.MyLifeLine.org

Offers free, customizable websites to empower cancer patients and caregivers to build an online community of friends and family.

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National Academy of Elder Law Attorneys m703-942-5711 www.naela.com

Offers Questions and Answers When Looking for an Elder Law Attorney, a pam-phlet that covers issues such as where to find an attorney, what questions to ask, how to discuss fees, and more, available either online at www.naela.org/About_ QandA.aspx or by sending a stamped self-addressed business-sized envelope to:

NAELA Q & A 1577 Spring Hill Road, Suite 220 Vienna, VA 22182

National Association of Social Workers (NASW) D b

202-408-8600 www.socialworkers.org www.helpstartshere.org—Offers many resources, including “Understanding End of Life Care.” www.naswwebed.org—Provides online courses on cancer, cancer caregiving, and end-of-life care for consumers and professionals. www.helppro.com/nasw/Default.aspx—Offers assistance in finding licensed social workers through the National Social Worker Finder.

National Cancer Institute (NCI) Q m :

800-4-CANCER (800-422-6237) www.cancer.gov

Offers many educational resources for cancer survivors, including information on coping with advanced cancer, end-of-life issues, and hospice. Last Days of Life (PDQ®) is an expert-reviewed summary about care during the last days to last hours of life.

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National Center for Grieving Children & Families (The Dougy Center) b866-775-5683 www.grievingchild.org

Provides support and training to individuals and organizations seeking to assist children in grief.

National Coalition for Cancer Survivorship (NCCS) m:b

877-NCCS-YES (877-622-7937) www.canceradvocacy.org

Advocates for quality cancer care for all Americans and provides tools that empower people affected by cancer to advocate for themselves. Its free programs include the Cancer Survival Toolbox, an audio program using patient stories to help people develop the essential skills to meet the challenges of their illness. Includes individual programs such as Communicating, Making Decisions, Standing Up for Your Rights, Topics for Older Persons, and Living Beyond Cancer, in addition to Dying Well—the Final Stage of Survivorship. Offers pamphlets including Teamwork: The Cancer Patient’s Guide to Talking with Your Doctor and You Have a Right to Be Hopeful, available in English and Spanish.

National Family Caregivers Association D800-896-3650 www.nfcacares.org

Advocates on behalf of caregivers. Services include education, information, support, public awareness, and advocacy.

National Hospice and Palliative Care Organization Q mb

800-658-8898 www.nhpco.org www.caringinfo.org (consumer site)

Offers assistance in finding a hospice; also provides consumer-oriented materials. Offers resources on pediatrics, legal issues, communication, caregiving, hospice, and grief. Materials are available in Spanish and Mandarin Chinese.

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On Our Own Terms: Moyers on Dying b800-257-5126 www.pbs.org/wnet/onourownterms

Videotapes of this 4-part, 6-hour PBS series on end-of-life issues may be ordered by calling Films of the Humanities at the number above.

OncoLink Q :www.oncolink.upenn.edu

A website managed by the Abramson Cancer Center of the University of Pennsyl-vania that provides a range of cancer-related information, including articles on the final stage of life.

Pathways: Education & Consultation in End of Life Care D b

520-400-0274 www.pathwayseol.com

Provides resources designed to help improve end-of-life care.

Physician Orders for Life-Sustaining Treatment (POLST) Paradigm bwww.ohsu.edu/polst/

Provides templates of available physician orders, which provide direction and documentation of patient preferences regarding a range of medical interventions. Designed to improve quality of care at end of life through effective communication of patient wishes and documentation of medical orders. Includes a list of states with recognized POLST Paradigm programs.

U.S. Department of Veterans Affairs : D

800-827-1000 www.va.gov

Veterans can consult with a VA benefits counselor at any VA Medical Center, or call the Department of Federal Benefits.

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Well Spouse Association :D

800-838-0879 www.wellspouse.org

Provides a quarterly newsletter, pamphlets, mutual aid support groups in many areas, letter-writing support groups, an annual conference, and regional and week-end meetings around the country for caregivers.

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Survivorship Tools

Distress Thermometer

The emotional distress that cancer causes can take many forms. Anxiety, anger, depression, and frustration are all quite common. Cancer specialists use the Distress Thermometer to help them measure the emotional impact of cancer on survivors. We have included a copy here for your reference. If you are experiencing emotional distress from your cancer, it is very important to know that help is available, and to go get the help you need. The Distress Thermometer may help you describe the way you are feeling to your healthcare team.

From the NCCN Clinical Practice Guidelines in Oncology™: Distress Management (V.1.2011) Jenkintown, PA: National Comprehensive Cancer Network; January 2010. To view the most recent and complete version of the guideline, visit www.nccn.org.

Clinical Practice Guidelines in Oncology – V.1.2011

Screening tools for measuring distressInstructions: First, please circle the number (0-10) that best describes how much distress you have been experiencing in the past week including today.

Extreme distress

No distress

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Clinical Practice Guidelines in Oncology – V.1.2011

Distress Management

DIS-A

Second, please indicate if any of the following has been a problem for you in the past week including today. Be sure to check YES or NO for each.

Yes No Practical Problemsq q Child care q q Housing q q Insurance/financial q q Transportation q q Work/school q q Treatment decisions

Family Problemsq q Dealing with children q q Dealing with partner q q Ability to have children q q Family health issues

Emotional Problemsq q Depression q q Fears q q Nervousness q q Sadness q q Worry q q Loss of interest in usual activities

q q Spiritual/Religious Concerns

Yes No Physical Problemsq q Appearance q q Bathing/dressing q q Breathing q q Changes in urination q q Constipation q q Diarrhea q q Eating q q Fatigue q q Feeling swollen q q Fevers q q Getting around q q Indigestion q q Memory/concentration q q Mouth sores q q Nausea q q Nose dry/congested q q Pain q q Sexual q q Skin dry/itchy q q Sleep q q Tingling in hands/feet

Other Problems: __________________________________________________

________________________________________________________________

Version 1.2011, 10/12/10 © National Comprehensive Cancer Network, Inc. 2010, All rights reserved. The NCCN GuidelinesTM and this illustration may not be reproduced in any form without the express written permission of NCCN®.

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Books Related to End-of-Life Concerns

Bahti T. (2006). Dying to Know: Straight Talk About Death and Dying. Tucson, AZ: Pathways: Education & Consultation in End of Life Care. Available at www.pathwayseol.com/products.html.

Byock I. (1997). Dying Well: The Prospect of Growth at the End of Life. New York, NY: The Berkley Publishing Group. Available at www.dyingwell.org.

Clark EJ (ed). (2010) Teamwork: The Cancer Patient’s Guide to Talking with Your Doctor. Silver Spring, MD: National Coalition for Cancer Survivorship. Fifth Edition. Available in English and Spanish.

Clark EJ. (2008). You Have a Right to Be Hopeful. Silver Spring, MD: National Coalition for Cancer Survivorship. Fourth Edition. Available in English and Spanish.

Gruman J. (2007). After Shock: What to Do When the Doctor Gives You—or Someone You Love—A Devastating Diagnosis. New York, NY: Walker & Company.

Harwell A. (2000). Ready to Live: Prepared to Die—A Provocative Guide to the Rest of Your Life. Wheaton, IL: Shaw Publishing.

Mintz S. (2007). A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard. Herndon, VA: Capital Books.

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Contributors

National Coalition for Cancer Survivorship Pamela J. Haylock, PhD, RN Susan A. Leigh, RN, BSN Ellen L. Stovall Debra Thaler-DeMers, BSN, RN, OCN Anne Willis, MA Oncology Nursing Society Ruth Van Gerpen, MS, RN, AOCNS

Association of Oncology Social Work Carol P. Marcusen, LCSW, BCD Katherine Walsh, PhD, MSW

National Association of Social Workers Elizabeth J. Clark, PhD, ACSW, MPH Yvette Colón, PhD, MSW

Area Specialists Tani Bahti, RN, CT, CHPN Kathy Brandt, MS Kenneth Doka, PhD Pam Malloy, RN, MN, OCN Lynn Nye, PhD

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Notes

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The Cancer Survival Toolbox is provided free of charge and used each year by thou-sands of people in cancer centers, hospitals, support groups, corporate wellness programs, community organizations, and professional societies. Please help make the program available by donating online at www.canceradvocacy.org/donate.

The Cancer Survival Toolbox programs are designed to support all cancer survivors. A set of 12 self-learning audio programs—as well as several additional programs for specific cancer types—are available FREE from the National Coalition for Cancer Survi-vorship (NCCS). These include Basic Skills programs and Special Topics that may be of interest to you.

Basic Skills (available in English and Spanish)

• Communicating

• Finding Information • Making Decisions

• Solving Problems

• Negotiating

• Standing Up for Your Rights

Special Topics (available in English and Spanish)

• First Steps for the Newly Diagnosed

• Topics for Older Persons

• Finding Ways to Pay for Care

• Caring for the Caregiver

• Living Beyond Cancer

• Dying Well—The Final Stage of Survivorship

To obtain a copy of these FREE programs, call 877-NCCS-YES (877-622-7937) or visit www.canceradvocacy.org/toolbox.

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Other Cancer Survival Toolbox Programs

• Living With Blood and Marrow Transplant

• Living With Chronic Lymphocytic Leukemia

• Living With Chronic Myelogenous Leukemia

• Living With Multiple Myeloma • Living With Non-Hodgkin Lymphoma

(available in English and Spanish)

The First Step to Cancer Survival™

NOT FOR SALEThe Toolbox is provided as a free program thanks to the generous

support of our partners.

©2012 National Coalition for Cancer Survivorship (NCCS)877-NCCS-YES (877-622-7937)E-mail: [email protected]/toolbox

Content Development Partners

®

Supporting partners who made the Toolbox possible through unrestricted grants:

Dying Well— The Final Stage of Survivorship

“I worked through my dying to

go on with my living. I believe that

once we have prepared to die, we

are really freed to live in whatever

time we have left.”

—Amy Harwell, a cancer survivor who was

not supposed to be around long enough to

write a book. She’s written two books and

is still going strong.

Practical Resources and Guidance for Cancer Survivors and Their Loved Ones

A Cancer Survival Toolbox® audio program designed to help you and your family choose the best path during the last stages of life. This supportive and informative program includes stories from cancer survivors and their loved ones, with guidance on:

• Communicating—deciding when and

how to have necessary conversations

• Finding practical resources—helpful

information and support

• Dealing with anxiety and grief—how

to best use your energy and make the

most of the time you have

• Making decisions that are right for

you—legal issues, treatment decisions,

hospice and palliative care

• Staying hopeful—to live as fully

as possibleNOT FOR SALE

The Toolbox is provided as a free program thanks to the generous

support of our partners.

©2012 National Coalition for Cancer Survivorship (NCCS)877-NCCS-YES (877-622-7937)Fax: 301-565-9670E-mail: info@canceradvocacy.orgwww.canceradvocacy.orgwww.canceradvocacy.org/toolbox

The First Step to Cancer Survival™

Content Development Partners

Funding provided for this end-of-life program:

Supporting partners who made this project possible through unrestricted grants:

®

New DVD Format

For use with computers, TVs, and newer CD players (either portable or in vehicle)

Additional funding for this end-of-life program provided by:

dying well— the final stage of survivorship · 2016. 8. 3. · 4 introduction dying well—the...

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